Most Children Not Getting Suggested Treatments, Screenings, Study Finds

Marisa Wexler MS avatar

by Marisa Wexler MS |

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Most children with sickle cell anemia (SCA), the most common and often the most severe form of sickle cell disease (SCD), do not receive preventive antibiotic treatment or participate in yearly stroke screenings that are recommended for those with the condition, according to a study based on U.S. data.

“It is imperative that new and sustainable strategies to address these gaps in quality of care among children with SCA are developed and implemented,” its researchers wrote. “In the absence of such focused efforts, it is likely that improvements to the quality of care among children with SCA will continue to be hampered.”

The study, “Trends in quality of care among children with sickle cell anemia,” was published in the journal Pediatric Blood & Cancer.

Children with SCA are at an increased risk of contracting bacterial infections and experiencing strokes. Because of these risks, U.S. guidelines have for decades suggested that children with SCA should be given prophylactic (preventive) antibiotics from ages 0–5. A transcranial Doppler ultrasound (TCD) — an imaging test that evaluates blood flow in the brain and can be used to assess stroke risk — is also recommended every year in children ages 2–16.

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A group of scientists in the U.S. set out to determine whether these guidelines are generally being followed among children with SCA. To that end, researchers analyzed insurance data collected from 2011 to 2018 through Medicaid programs in Michigan and New York State. (Medicaid is the U.S. government-funded program that provides health insurance to people with low incomes.)

In the first analysis, the team looked at data for 1,784 children (384 in Michigan and 1,400 in New York) between the ages of 3 months and 5 years who were eligible for antibiotic prophylaxis. All children were followed for at least a year.

The team assessed the proportion of children who had filled pharmacy claims for at least 300 days’ worth of antibiotics per year, indicating that they were taking the medications more or less routinely.

Results suggested that the vast majority of patients were not taking prophylactic antibiotics as recommended. The overall rates of appropriate antibiotic prophylaxis fills in both states ranged from 16% in 2016 and 2018 to 22% in 2011.

Statistical analyses also showed the proportion of children taking prophylactic antibiotics as recommended did not change significantly over time in Michigan. In New York, however, the proportion of children taking recommended antibiotics decreased significantly over the time period analyzed.

In another analysis, researchers used data for 3,439 children (710 in Michigan and 2,729 in New York) ages 2–16 — the population in which TCD screening is recommended — who had been followed for at least one year. Researchers then looked at the proportion of patients who had recorded insurance claims for yearly TCD screens.

Overall rates of yearly TCD screening across both states ranged from 39% in 2016 to 45% in 2013 and 2018. Statistical analyses showed no significant changes over time in TCD screening rates in either state.

“We found that the majority of children with SCA enrolled in the Michigan and [New York State] Medicaid programs do not receive recommended preventive services,” the researchers wrote. “Despite the national focus on improving receipt of preventive services among those with SCA and overwhelming evidence of the efficacy of these services in preventing serious morbidity, low rates continue to persist.”

The researchers noted that this study also found no evidence indicating the rates of these preventive measures are getting any higher as time goes on. They stressed the need to find new strategies to increase the number of children who receive these interventions, which can be life-saving.

“Given the documented impact of these preventive services on incidence of invasive pneumococcal [bacterial] infection and stroke, increasing receipt of preventive services will decrease mortality and morbidity among this vulnerable population,” they wrote.

Researchers also pointed out several strategies that might help increase the use of these preventive measures — for example, prescription delivery services that make it easier for patients to access medications, or having TCD readily available in sickle cell clinics so that screening can be done during routine annual checkups, rather than as a separate trip.

They stressed that a combination of strategies likely will be necessary to make these interventions available to every child that can benefit from them. They also highlighted the importance of educating patients, caregivers, and healthcare providers about the importance of prophylactic antibiotics and TCD screening for children with SCD.